👉🏽 question about Epo 👈🏽

[LucyGeering]

Hello MPNers,

Those of you with experience of Epo treatment - do you know, even roughly, how long it took for you to start feeling benefits from it?

And is it true that ideally one’s Epo level should be lower rather than high?

From a tad confused, but still chipper, Lucy

[DJK12]

Hi Lucy My first cycle of EPO at 15,000 IU three times a week had little effect after, if I recall correctly, about 6/8 weeks.A junior doctor said if it hadn't worked by then it wouldn't and promptly gave me a transfusion. However a few weeks later the consultant disagreed and doubled the dose to 30,000 IU again every three days.

Eventually after 3 months my hb levels were at 12/120 (depending how your hospital measures it). To stop it going up further the injections were kept to same dose but only every 5 days. My hb now hovers at 10/100.

I did feel benefit for a few months but now unfortunately blood is taken off me every two months when I get to the magical 10 in an effort to reduce my ferritin levels. They are too high because of too many transfusions.

I'm afraid I can't help about EP0 levels.

Best wishes glad you're chipper!Diana

[LucyGeering]

Hello Diana,

Thank you so much, I hadn’t appreciated what a long game it is with Epo. That’s really helpful. 3 months seems like a long time, but makes sense.

I had my first dose last Tuesday evening; 30,000 once weekly for 4 weeks and then I go back to the consultant to see what’s going on in my blood. My HB was 85, which is when the anaemia starts throwing all kinds of nonsense at me. This is the first day since starting it that I’m feeling ok enough to get out of bed 🙌🏽 - hopefully this is an onwards trend!

Kind regards, and many thanks again for your reply,

Lucy

[DJK12 in reply to LucyGeering]

I think I've read other posts where people just have to have occasional top ups of EPO so possibly I was just a very slow reactor but I got there! Hope you continue to feel stronger. At HB of 85 I certainly feel less than well and any lower starts to make life more than tricky. Good luck Diana

[Cja1956 in reply to LucyGeering]

Hi, Lucy, I just saw your post that you had your first EPO injection. When I first started, it was 40,000, and my hemoglobin was 8.7 when I started. I had labs every week first, and if my hemoglobin was below 10.2, I had the shot. The good thing about being in the USA is that we get our lab results immediately. I did this for 4 1/2 months and then my numbers stabilized. They ended in January, 2019. Your doctor is doing the right thing. 8.7 is very low and I know exactly how you feel. I’m glad you are finally starting to feel better. I wish you all the best.

Cindy

[LucyGeering in reply to Cja1956]

Gosh, thank you so much for replying Cindy. I can see I need to settle in for a longer haul with Epo than I’d perhaps anticipated 😆! Also it’s good to hear that you think my Dr is doing the right thing (he actually treated my late Mum for her post-PV MF 15 years ago, when he was newly qualified...),

Warm wishes,

Lucy

[DJW1]

Hi Lucy, I started epo in 2018, at which time my hemoglobin was around 8. I started on 40k, once a week. after 3 weeks I started to see results, with my numbers rising slowly until after several months I was up to 12-13. At that point I reduced frequency of injections, going up to 2 months between. I was able to go through all of 2019 and 2020 like that. However the epo tends to only work for a couple years for most people, and several months ago it slowly stopped working for me. My numbers are back down in the 7s not, so I have been getting transfusions every month.